Today is Autism Awareness Day. A day I never thought I’d be writing about, let alone living.
We are aware of autism every day.
While pregnant with Joshua and learning his diagnosis of Down syndrome, I developed a sinus infection induced by crying. The doctor reassured me, “Down syndrome is the ‘Cadillac of disabilities’. I’d much rather have that than autism.”
Just as I was getting used to my Down-syndrome-may-not-be so-bad life, it reared its head – The Scarlet “A”.
There is no prenatal test. No blood test. Not even a really definitive test.
Not like with Down syndrome in which chromosomes glare black and white declaring disability.
Autism sneaks in and overtakes without warning. I did not see autism coming.
I never knew autism could co-exist with Down syndrome.
“Josh is way too affectionate to have autism. He smiles and hugs and looks me in the eye.”
An unscrupulous thief crept into my life and robbed me of all the possibilities I was told could be for my son with Down syndrome.
My heart broke bit by bit as I listened for newly-babbled new words which had faded into non-existence.
Hard-earned skills exchanged for obsessive and destructive behavior.
Play drifted away and excessive video-watching became the only interest.
The gap between milestones reached by his peers with DS widened and soon the chasm became too obvious to ignore.
I wanted the diagnosis to prove I was not in denial about Josh’s limitations.
A dual-diagnosis brought relief.
Relief that my son was not “just low-functioning”, but had something else “wrong”. That it was not that I had just not done enough.
Because I thought “enough” -enough therapy, enough hard work – all those things I was told would be “enough” – would make this helpless little baby reach his full potential. After all, that is what we are all told. With the proper resources and opportunity, people with Down syndrome can be contributing members of society.
So I hunkered down and did it all – therapies and specialists, meetings and workshops. I reluctantly put my baby in school at the ripe old age of three and waited. I waited for it and all the experts to make it “work”.
During this time, I had another baby and wondered if this contributed to Josh’s regression. Others seemed to have more time to devote to their special needs child, yet I couldn’t seem to “do it all” with four children under eight.
Accolades to the moms whose children did so well cut me to the core, as I couldn’t keep up.
Slowly, the little boy with Down syndrome drifted into a little boy with no words and upsetting meltdowns, overturning tables and biting classmates.
My precious little boy once praised and adored by his teachers became a problem.
My quest to find answers was met with opposition and seeming futility until at last it came.
The diagnosis of autism simultaneously comforted and terrified me.
My dreams shattered yet again as I grieved again for the son I thought I would have and the black hole deep in my heart grew until everything became clouded by a disability lens.
Wondering how my son could ever fit into this world where achievement rules, ability is applauded and being the brightest and the best is the goal.
Nothing seemed to apply to Joshua.
No sermon preached. No Bible verses studied. No meeting attended. No one seemed to have my “problem’.
My different kind of normal was again challenged. I felt alone in my noisy house-full.
I was afraid to tell my friends within the Down syndrome community that I prayed for Joshua to be healed. I feared judgment and criticism for not accepting him. Or worse – that I didn’t love him.
But my heart ached because of my intense love for him. My mother’s love, fierce and protective – burning against those who were deeming him a difficult child and raging against those who looked down upon him.
Offended at those who thought he needed to be healed and angry at myself for wanting him to be.
And not strong enough to live this kind of existence without help from God. I had cried to the Lord upon his diagnosis of Down syndrome and a severe heart defect, “God, I can do one, but both?? I am not strong enough for this!”
The wonderful thing is that I don’t have to be. When I am weak, He is strong.
God has allowed the different than what I ever expected and yet, He has shown me that I have been given a great honor in being Joshua’s mommy.
And that jealousy and comparison have no place. I need not compare him to anyone.
And as I continue to pray and ask for God to help me bring up this lovely creation He made in His image, I am reminded that He is my strength.
I am reminded that all feelings of failure and defeat are not of God, but as I lean not unto my own understanding, I find a path.
A path often rocky and dirty yet cleared by His grace little by little to guide me each step of the way as I muddle through this journey.
And while I am aware every day of autism, I am also aware that every day has new mercies, new opportunities and a new awareness of things wonderful and to be celebrated.
Lord, help me to live aware. Aware of all the wonderfulness that is life.